Not quite ready for the long goodbye

Milton H. Raphaelson attributes much of his success to the brown paper bag.

As a boy working at his dad’s variety store at Pleasant and Chatham streets in Worcester, he grew adept at adding multiple customer purchases with a pencil on a brown paper bag. Years later, as a district court judge, he credited the brown bag with his ability to compute child support and settlement figures faster than anyone in the courtroom.

“It used to be my big talent,” he said. “As a judge, all you had to do was add, subtract and use common sense. The rest of it is bull (expletive).”

It’s a cruel irony of his disease that such a famed faculty with figures was the first skill to disappear. The retired judge, known for his sharp intellect and quick, dry wit, suffers from Lewy body dementia, a progressive brain disease and the second most common cause of neurodegenerative dementia after Alzheimer’s.

During an interview in their Holden home, he and his wife, Betty, said they realized that something was wrong about a decade ago, when he lost his sense of smell, grew forgetful and experienced severe sleep disorders and nightmares. After learning of a dementia study at Butler Hospital in Providence, Betty took her husband for tests.

“I told myself, ‘He’ll B.S. the doctor because he’s so smart,’ ” she recalled. “Sure enough, the doctor comes out with Milton and says he’s not eligible for the study. They were joking around, back and forth. I was so mad. I said, ‘This isn’t funny. I live with him and know what’s going on.’ ”

The judge was referred to another doctor at Butler, who diagnosed him with Lewy body dementia, or LBD.

That was nine years ago. While the disease has slowly taken its toll, the Raphaelsons say they’re lucky because it was diagnosed early. Certain drugs can cause extreme adverse reactions in those with LBD, while others can improve cognition and reduce other symptoms.

Lewy body isn’t a rare disease, even though it’s not well known. According to the Lewy Body Dementia Association, LBD accounts for up to 20 percent of dementia cases, but only 30 to 50 percent are accurately diagnosed. It’s often tricky because it can occur in combination with Parkinson’s disease or Alzheimer’s.

Last week, the couple spoke frankly of Raphaelson’s cognitive and physical decline. A man who once made decisions for a living now struggles with insight and judgment. At 82, his memory is poor and he can become disoriented. The right words are often elusive. Four years ago, Betty made him surrender his driver’s license because he would hallucinate that a man with a dog was in front of his car. Physically, he struggles with balance.

“The frustrating thing is when I’m trying to explain something, and the person I’m talking to has no idea what I’m talking about, and I realize that I don’t, either,” he said. “Sometimes I don’t make any sense and I can hear that. So I stop talking.”

To face the challenges of such a devastating illness, the Raphaelsons have clung to their sense of humor and a mutual devotion honed by 39 years of marriage. They joke that she’s a mess at balancing the checkbook but still better than he is; he claimed that Betty “sometimes tries to run away from home,” but always comes back. A retired substance abuse counselor, she inspired her husband’s advocacy from the bench for more focus on the role of alcohol in domestic violence. A former presiding justice at Dudley District Court, Raphaelson retired in 2000, when he turned 70. He was known for his down-to-earth approach, creative sentencing and ordering defendants to attend AA meetings.

Asked what he missed about being a jurist, he quipped, “Putting people in jail.” Then he grew serious. “I miss changing people. Getting a win. Getting someone to stop drinking.”

Three of his four children became lawyers. Daughter Laurie said her dad “has handled the illness better than most” and never shows a trace of self pity.

In 2000, addressing Worcester’s legal community at Law Day, then-judge Raphaelson urged the crowd to remember the words outside the Springfield court: “Fill the Hall of Justice with good men, but not so good as to forget what is human frailty.”

The paper bag is history. But today, adding up the sum total of a rich and rewarding life, the local grocer-turned-judge calls himself a fortunate man.

“Everyone dies sometime,” he said. “If the grim reaper comes, I’m ready.” He paused. “I just wonder where he’s going to take me.”